Ross Procedure Pros and Cons

[Destinova]

Hi everyone,
I have the impression that most Ross failures mentioned in this forum have aortic insufficiency. Is there a difference between the surgical outcomes of patients with aortic insufficiency compared to those with stenosis?

I had both moderate stenosis of the aorta and severe insufficiency/regurg of the AV, and the Ross has been a success thusfar, replacing both the valve and the root in one swoop.

Robertr: I was slightly symptomatic when surgery was decided upon, with some shortness of breath and angina, but definitely not severe. My surgeon told me post-op of my aortic valve: "there wasn't much left but a lump of tissue". It's surprising how bad things can get before you really feel them. As others have mentioned, while you may not feel the symptoms, your heart is overcompensating and the risk of enlarging your ventricle is what you want to watch out for.

Good luck!
Rob

 

[StretchL]

So much great information

So much great information

I'm sorry I've not been able to post for a while... been out of town... there is so much information to digest here... i'm so grateful for everyone taking time to share their experiences...

?*Destinova's information about how bad his valve was even though he wasn't terribly symptomatic AND ESPECIALLY all the research he shared...

? Mitchner's story about over doing the excersize during post op rehab...

?*Rachel's great question about the 20 year survivors...

I'm covered up with work right now, but Dr. Stelzer has invited me to communicate with him any time... I want to share some of the information presented here with him, and with my cardio (who's pushing the mech valve), and I'll post their responses here for all...

 

[Lynlw]

I'm sorry I've not been able to post for a while... been out of town... there is so much information to digest here... i'm so grateful for everyone taking time to share their experiences...

?*Destinova's information about how bad his valve was even though he wasn't terribly symptomatic AND ESPECIALLY all the research he shared...

? Mitchner's story about over doing the excersize during post op rehab...

?*Rachel's great question about the 20 year survivors...

I'm covered up with work right now, but Dr. Stelzer has invited me to communicate with him any time... I want to share some of the information presented here with him, and with my cardio (who's pushing the mech valve), and I'll post their responses here for all...

I believe that Arnold the gov's ross failed because he over did it post op, I was looking for a link, but gave up ) lyn

 

[Destinova]

You're more than welcome StretchL!

One more thing I wanted to add that I know a lot of people have found interesting about my own case. I was a redo, having had a non-balloon valvulotomy at age 3 in an attempt to repair the stenotic bicuspid aortic valve. It was this surgery that had caused the regurg. and insuffiency in the later years.

Because of this, there was lots of scar tissue etc. to remove during the recent RP, and I was on the table for over 9 hours. So, expect an general increase in the operative time (and therefore, risk) with the Ross, and even more if this is not your first OHS. My kidneys took a beating being on bypass this long but they rebounded well.

 

[chilihead]

Robert,

You're in good hands with Dr. Ryan. Best of Luck. I had the same exact apprehension as you about getting the surgery too soon. But I'm nearly 3 years post Ross and feel great. Ryan did a great job and is a very skilled Ross surgeon.

 

[StretchL]

Robert, how did you feel before your surgery? Can you give a before/after comparison? Thanks.

 

[geothoix]

Our experience

Our experience

My son and I met with Dr Stelzer in early 2005. He was candid about his numbers and even broke them out by the first 100 and the remainder. We were very impressed with Dr Stelzer but selected another because of differences in facility infection statistics, approaches and geography.

Nothing in the success numbers, after the first 100, indicated negative results that influenced our decision.

Best wishes.
G

 

[Turkey Hunter]

Hi Ibasar,

I don't feel qualified to say who is an "ideal candidate," although I heard that people with aortic stenosis, as opposed to insufficiency, tend to be better candidates. I believe the underlying "cause" of the aortic stenosis is also important. So your son may very well be a good candidate. I have heard from many people on this board and others that Paul Stelzer is a great surgeon and he would likely be able to determine your son's candidacy for the Ross: his website has contact information:

http://www.ps4ross.com/index.shtml


I also have heard great things about many of the surgeons and cardios at the Cleveland Clinic: http://www.clevelandclinic.org/quality/guides/heartDisease.htm

Navigation of the website will give you contact information for all of the cardios and surgeons at the Cleveland Clinic.

I am sure that others will be along with more suggestions: these are just surgeons/institutions that I have heard very good things about second hand. I also know that there are many experienced Ross surgeons in Europe. Others will likely be able to give you better recommendations concerning specific surgeons both in states and europe.

Brad

Hi Brad,

I had my RP at CCF, as you can see from my signature.
I did however want to point out that the RP had fallen out of favor at CCF until mine. I had the first RP there in three years. The head of cardiothoracic surgery was not aware of my RP until it was done. They are doing two to three a month now according to my cardio last year.

With that being said, I wanted to agree that the quality of surgeon (experience) is the key to any speciality surgery. Especially something like the Ross.

I don't think any of us here are qualified to state who is a good candidate. We all have the info we researched and the info from our docs. Like the Conective tissue dissorder statement; this is correct. You will not be a candidate for the ross with this type of dissorder. Any facility who does not put you through many, many tests to know if you have a tissue dissorder prior to your surgery is not treating you just and fair in my oppinion.

Just my $0.02 for now.

Ben

 

[Lutesj]

Some thoughts on messages in this thread...

Some thoughts on messages in this thread...

Okay, seems like I'm a long term Ross person that Rachel was looking for, although I'm not sure 7 years post-op qualifies (but feels like a long time ago to me Just had a cardio visit, everything working as the good Lord designed it to, haha.

I did have AVI (aortic valve sufficiency) AND I had no symptoms of note from the time I found out about it (1987) until surgery in early 1999.

I'm guessing many long term Ross folks don't come on here, why would they if all is well? I come back to this and another Ross page because I know how much reassurance meant to me emotionally back then (I'm 42 now). In fact, I often find myself tearing up at work as I read the stories of folks making their decision and remember how much I stressed and shut down emotionally prior to my surgery (I waited 2 months from the time I was informed).

There is nothing harder than seeing a loved one or children before you go away to surgery, but I recall a strange calm that day as I realized that the Lord would guide the hands of my surgeon (Dr. Doty, SLC, since retired).

So, there are good stories and not so good stories on this thread and forum. Only YOU can decide what is best for your body, but once you make your decision, pursue it with passion and faith.

Take care

John Lutes
RP Alumni 1999

 

[Turkey Hunter]

The thing I most struggle with is that I am not really having any significant symptoms; therefore, I feel like I am risking my life with surgery too soon when perhaps it is not yet necesary.

Anyway, Thanks Again for your post!

-Robert

Robert,

I too did not have any symptoms I really noticed at the point I had my surgery. (Granted I had a huge aneurysm just outside my heart in my aorta) But, it wasn't until after the surgery that I realized that I had a bunch of symptoms. They had just came on gradually in my life and my subconcious made reasons for each that I conciously accepted. For example, I was in great physical shape at that point and when I would start my daily cardio routine, i owuld get out of breath extreamly fast. But I could go and go and go on the treadmill or bike; so in my mind I had just decided i had a touch of asthma. I was wrong. I am not nearly in the physical condition I was then and I do not get out of breath near as fast as i did then.

Yes, get the issue settled with your doc and search yourself. In your heart of hearts, you will know what is right.

Ben

 

[Turkey Hunter]

Dear Stretch,

I did not know that the Ross Registry domain had expired. Makes me wonder if the data they were posting was up to date if they can't even keep up their domain name. So perhaps my interpretations were misguided.


Brad

The Ross Registry and the subsequent e-mail listserve has moved. Try checking in Yahoo groups for the RP list serve and you will be guided to the Registry.
http://groups.yahoo.com/group/rossprocedure/

On this list you will find the Long term patients you are looking for. But, Most don't frequent the group or this site.
Apparently, here I am one of the long termers.

Ben

 

[StretchL]

Long Term Outcomes

Long Term Outcomes

Okay, seems like I'm a long term Ross person that Rachel was looking for, although I'm not sure 7 years post-op qualifies (but feels like a long time ago to me

Way cool that you're doing so well!

The Long Term outcomes that my doc is interested in is 20 years+. He wants to compare long term numbers like that for the Ross v. mechanical, etc.

Although personally and emotionally 7 years seems like a long time, medically and scientifically you're still a newbie.

 

[StretchL]

Post Op Robert?

Post Op Robert?

I am scheduled for AVR in 14 days <sigh>, and my 1st choice is the Ross. My Surgeon is Dr. William Ryan in Dallas. I hopw to have the same positive results as you and to lead a reasonably normal life afterwards...

Robert, are you out there? How are you doing? Enquiring minds want to know!

 

[StretchL]

My son and I... were very impressed with Dr Stelzer but selected another because of differences in facility infection statistics, approaches and geography.

Could you share with us where you went and who did the surgery? Also, anything about those infection stats at Beth Israel? Thanks.

 

[Lutesj]

Long term feedback...

Long term feedback...

Well Rachel (and others), I understand what you're asking for, but might I suggest that you go actively seek the answer from the doctor's that are frequently mentioned on here as being the leaders in the procedure (Elkins as an example), sure their offices would help with your inquiry.

Again, those with good experiences ARE NOT likely to be lurking on this board

Here's an article that might help somewhat.

http://www.ctvstexas.com/a_highlights_ross.html

 

[Mary]

If you read the "historical development" on the following site, http://http://ps4ross.com/ross/history.html you will see that the Ross procedure wasn't really up and running until 1988-1989. The Montana registry wasn't started until 1993--thirteen years ago.
The twenty year statistics aren't available yet.
I believe that the Ross procedure, when done by a surgeon with many RP's under his belt, is an excellent alternative to pursue.
Good luck to all who make it their choice!
Mary

 

[RCB]

For more long term history

For more long term history

You may check:

http://www.hsforum.com/stories/storyReader$1470

 

[StretchL]

Here's an article that might help somewhat.

http://www.ctvstexas.com/a_highlights_ross.html

Thanks so much for that great link. I'm going to forward it to my cardiologist.

 

[StretchL]

You may check:

http://www.hsforum.com/stories/storyReader$1470

Curmudgeon, it appears that you're a good egg after all.

That link is fabulous.

Thank you.

 

[RCB]

Stop it Stretch!

Stop it Stretch!

Curmudgeon, it appears that you're a good egg after all.

That link is fabulous.

Thank you.

I work very hard at my curmudgeon reputation and a few thousand more comments like that and it is all for nothing!